Lorraine found that she could no longer play complex card games, such as solo and bridge, so her friends arranged for her to attend the local U3A (University of the Third Age) for regular lectures and social get-togethers.
Anne
I’ve played golf with my friends every Saturday for 30 years, but now I’m having trouble keeping track of my score, and my friends have to keep correcting my scoring. Last week I finally told them that I have Alzheimer’s disease and they very kindly offered to do the scoring for me. Now I can relax and enjoy the game.
Rodney, 72
When you have a memory illness, you might find yourself withdrawing from social activities.
My social circle has slowly reduced.
Sarah, 72, has Alzheimer’s disease
Sometimes people feel ashamed or worthless when they have dementia. Telling others your diagnosis may lead to a feeling of being stigmatised. Most people cannot understand what you are going through, so you can start to feel alone. If you do start to withdraw, you may feel even less confident about yourself because you start to lose your identity as a valued friend, group member or relative. It is important to maintain your social contacts and to share some of your concerns about the changes you are experiencing with trusted relatives or friends. It can provide a sense of relief to explain to others that there is a reason why you forget things. Dementia support organisations provide a range of opportunities to meet and talk with other people who have dementia. This can give you the chance to share with others who know how you feel.
I’ve ‘outed’ myself about my memory problem. It’s good to have talked about it.
Ray, 83
Friends can react differently to the changes they see in you. However, some of your friends may find your problems something they don’t want to know about, and withdraw.
I discovered, very painfully, early on that it is a mistake to tell friends.
Jim, 74
Jim found that some of his friends treated him differently after he told them about his dementia. They stopped asking for his opinion and no longer really listened to him, but Joan had a more positive experience.
Joan was always a very good tennis player, who played for a city club and a country club near her holiday home. She was diagnosed with Alzheimer’s disease. Several members of her city tennis club became very frustrated with the changes they noticed in Joan’s tennis abilities. She forgot which side of the court she should be on and when it was her turn; however, her technical competence at hitting the ball and serving remained excellent. She was very hurt when officials suggested she no longer play. Fortunately, her friends at the country club were more tolerant. They found that if they reminded her when it was her turn, and which side she should stand on, she was still able to play well with them. She felt valued and respected by this group of women.
Anne
When you have dementia it can be difficult to keep track of conversations, especially when you are in a large group. Social activities that rely less on conversation and memory can be easier to take part in. These could involve attending a sport event, watching television, seeing a film or a show, going on a bushwalk or taking part in a group exercise session.
Handling frustration
The changes you are experiencing in your memory will affect you in a unique way. The type of memory illness that you have may be different from another person’s, and cause varying symptoms. Many memory illnesses cause more difficulty with remembering recent events than things that happened in the past.
I can remember way back, but tell me something and ten seconds later I can’t remember a thing.
Kevin, 88
When you have this type of memory problem, it is like your ‘record button’ for recording new memories is not working. It is not your fault: this part of your memory system has become less reliable and you are sometimes not able to ‘record’ new memories, even if the information is repeated and you try hard to remember it. You might forget what someone has told you, people’s names, appointments, where you have put something, or have difficulty learning something new. This can be very frustrating and make you feel irritable, as it can pose a threat to your independence.
I do voluntary work at the local church. I feel bamboozled. I forget where I have put things, and must write things, like appointments, down on scraps of paper. I just can’t keep it in—it just doesn’t stay there. I’m not coping, I’m frustrated. My daughter helps, which is lucky. She helps a lot with my finances. I don’t want to lose my memory; I want to boost it now.
Janet, 73
Using strategies for remembering
Using memory strategies means you can maintain as much independence as possible by lessening the load on your memory. This will help you feel more confident, and lessen some of the anxiety that often goes hand-in-hand with dementia.
Keep in mind that a memory illness doesn’t necessarily cause difficulty in all areas of thinking. You will have strengths to draw on; for example, many people find they do well with reading, writing, longstanding memories and general knowledge, and well-learned skills, such as painting, singing, dancing or bowling. It helps to focus on these strengths, and keep doing more of what you can do well. Play to your strengths!
I play the piano to ease my frustration. I can still do that well, and remember so many pieces.
Lyn, 77
I go for a walk with my dog everyday—I’m okay when I’m with my dog.
Bob, 85
I might have dementia, but I’m not going to let it get me down—I’m going to enjoy life as it is now!
Toula, 74
I’m doing the best I can with what I’ve got.
Alex, 82
Memory strategies that involve using your strengths to get around any problem areas work well. For example, if reading and writing are a strength, then you can write a note to remind you of something that you might usually forget, like the details of an appointment. In this way, you are compensating for what is lost, rather than attempting to restore your memory back to how it was before the dementia began. This is like using a crutch to help you walk when you have an injured leg. A memory ‘crutch’ will help you feel more confident that you will remember important information.
Other approaches to enhancing memory can involve completing repeated memory stimulation exercises (see Chapter 5 for more information about memory stimulation), or the use of complex memory improvement techniques (see Chapter 6 for more information about these mnemonic strategies). When you have dementia, these approaches may put too much stress on your memory, possibly leaving you feeling less confident and more anxious about your memory. We talked before about your ‘record button’ becoming unreliable because of your memory illness. If your record button is no longer working, it may be best to work around this problem. Be proactive, and set up a back-up for incoming information, in case you forget it.
You will probably find that you are already using a ‘memory back-up system’, with a variety of common-sense techniques, like writing things down, because you have naturally adapted to the changes in your memory.
I was already handling this—now it just has a name. I’ll keep doing what I’ve already been doing. I feel much better now that I’ve got my notebook.
Wendy, 69, has Alzheimer’s disease
The strategies that you use will be different from those used by someone else with memory loss. We all have personal preferences in strategy use, and have different needs for using them. Some of us have always used a diary, others prefer a noticeboard. You are more likely to continue using memory strategies if you build on those that have worked for you in the past.
When I was at work I used to carry a little notebook with me in my pocket. I stopped doing that when I retired, but I might start carrying one again now.
Tony, 84, retired businessman, has mixed Alzheimer’s and vascular dementia
Your own best strategies for remembering
Before making changes to the memory strategies that y
ou use, think about the following:
• What specific situations do you need memory strategies for? For example, remembering appointments, to take medication.
• What types of memory strategies do you like using? For example, writing notes in a book, reminders in your mobile phone, getting your husband to remind you.
• Are you already using any memory strategies? For example, shopping list, calendar.
There will be various situations where memory strategies will help, so you will need not just one technique, but a whole range of strategies. You don’t need to remember everything! Prioritise and work out what is important for you to remember.
Being organised with a regular weekly and daily routine can help reduce the load on your memory. There will be times when you need to rely on strategies more than other times—usually when you are dealing with any change to your lifestyle, like when you are on holidays, moving to a new house, or learning how to use a new piece of equipment. Be kind to yourself. Accept that some aspects of your memory and thinking have changed, and set realistic expectations. Allow extra time to do things that are new and complicated, and work on these tasks when you are feeling energised.
Your memory problem is likely to change with time, so you will need to make changes to the memory strategies you use, to adapt to any changes in the symptoms of your illness. When you have dementia, you have needs over and above those with milder memory inefficiencies so, while many of the memory strategies discussed in Chapter 6 are also relevant, it is worth elaborating on strategies that are particularly suitable for those with more significant memory issues. Chapter 9 describes ways that family members or carers can assist with strategies, and Chapter 10 outlines changes we can make as a community to support those with memory loss.
A memory centre in your home
Choose a special area of the house as your ‘memory centre’. This area is your central point for storing information that needs to be remembered. Many people find the kitchen a good spot because it is somewhere they go regularly throughout the day and evening. You need to make it part of your everyday routine to regularly check your memory centre for reminders.
It works well to keep your phone in your memory centre, and have a notebook and pen ready to take notes while you are on the phone. Use a notebook rather than loose notes, as scraps of paper are easily lost! Keep your calendar or diary and a clock here, too. You could put up a whiteboard and/or pin board here. Keeping markers and pens attached to the board means you don’t have to look for one when you need to write something down. Notes that are out of date need to be removed. It is best to keep the area simple and ordered, with no clutter. Perhaps someone else can help you set up and maintain this memory centre.
A memory centre can help you to remember:
• Personal information. You can have a section for permanent display, which could include names and phone numbers of people you see regularly (perhaps next to photographs of each person).
• What day it is today. Either you or someone else can write up today’s date on the whiteboard, or mark off the days as they pass on a calendar. A clock or watch that shows the day and date is helpful. Another idea is to use a flip-top desk calendar and get into the routine of turning each day over and clipping it, when you come into the kitchen for breakfast. You can also check the day and date in the newspaper, or on your mobile phone or computer.
• What time it is now. Have your clock easily visible. A digital clock is often easier to read than a more traditional analogue clock.
• Plans for the day or week. Appointments, social activities, and things to do can be written on the whiteboard or calendar/ diary, and crossed out when completed. This can also give you a record of your daily activities to look back on.
• Things you need to buy or collect. Update your list when you think of items you need. Remember to cross them off routinely as you put them away.
• What to do in an emergency. Keep a clear and separate list of emergency numbers by the phone. Include your address and a description of where you live, as it may be hard to recall these details under the stress of an emergency. Consider getting a push-button personal alarm system to wear around your neck, which is linked to a 24-hour emergency assistance service (it registers all your details automatically).
• Phone numbers. Attach a list of commonly used phone numbers near the phone, and regularly update the contact details for people stored in your phone. There are simplified phones available that can be programmed with a contact list display of regularly used phone numbers.
• Phone messages. If you use your phone near your memory centre, you can readily refer to your calendar, diary or notebook, and write messages straight into the appropriate places.
• Medication. Keep a list of your daily medication regime in your memory centre, too, as well as your medications, stored in an organised fashion. As suggested earlier, you could use a ‘dosette box’, a small plastic storage box for managing regular medications. The box is divided into compartments that allocate pills at particular intervals; for example, a weekly box with seven compartments, each holding one day’s pills. Of course, the box has to be filled at weekly or other intervals, but it is simple to use and easy to check whether you have taken the necessary tablets. You may need to arrange for someone to help you load it up regularly. Alternatively, you could arrange for your pharmacist to make up a personalised foil blister pack (‘Webster pack’) of your medications once every week.
Marjorie, who lives at home by herself, was happy to get some advice about setting up a memory centre in her house. The first thing we did was clean up the clutter on her fridge door. She had fridge magnets from various tradespeople and emergency services from years back. We put the contacts that she used regularly in a prominent place, and got rid of the contacts that she no longer needed. We discovered she had both this year and last year’s diaries on her phone table, and was often making entries in the wrong one. To avoid confusion, we put last year’s diary away in a drawer, leaving only one diary accessible to write in.
Anne
You can carry a smaller, portable memory centre with you whenever you leave the house. A notebook works well, and could include the following information:
• identification details in case of emergency, including your name, address, phone number and emergency contact person
• a map showing where your home is, or the location of any other place you often visit
• important phone numbers.
Kevin has Alzheimer’s disease. He retired from school teaching a year ago and now works part-time as a school caretaker, doing cleaning and painting. His wife gives him notes to take with him about the jobs he has to do each day, and he uses a diary with a pencil attached, which he always keeps in his top pocket. The diary helps him remember which days he is scheduled to work.
Anne
Writing things down
If I write things down, I don’t feel so silly.
Owen, 74, has early Alzheimer’s disease
Writing things down helps you to remember, as well as serving as a reminder. Keep as many of your reminder notes as possible in your memory centre. If you have notes stored in too many different places, you will have to remember where you put the notes! There will be times when reminders are needed away from the memory centre—so make sure that these written notes are easy to spot, accessible, and close to the to-be-remembered activity. For example, put a shopping list pad on the refrigerator or pantry door, or attach instructions for how to operate a piece of equipment on the equipment itself. Storage areas, such as cupboards and drawers, can be labelled with words or pictures that describe their contents.
I don’t trust my memory. I have a small diary, which I take with me, and every day I need to check it. I also ask my family to remind me about things.
Alison, 69, has Alzheimer’s disease, lives alone and does voluntary work
You can invite others to write reminders in your diary for you, and to make s
ure you write information down when they tell you some important details over the phone.
When I’m talking to someone and they say something that is important, and I want to remember it for later, I stop them and say, ‘Hang on, I want to write that down so I can remember it later’, and I get my notebook out and make a note straight away.
Stojan, 75
Finding things in their special place
Storing objects in specially designated places is helpful. Leaving objects in visible locations can act as a reminder to do something. Medications can be left somewhere obvious in the kitchen if they are to be taken with meals, such as on the kitchen bench. You can put medication next to your toothpaste if you have to take it in the morning and at night. A special place near the front door, such as a hall table, can be used to put things that you need to take out with you, such as a letter to be posted.
Work on dealing with the most commonly lost objects. For many people these items include:
• Glasses/spectacles can be worn around your neck on a glasses chain. Or you could have a brightly coloured box in each room for glasses storage, and make an effort to always leave your glasses in this box. If possible, have a spare pair of glasses as a back-up.
• Wallets/handbags can be stored in your memory centre, perhaps in a drawer or on a shelf nearest to your calendar, noticeboard, or where you keep your diary.
• Keys can be stored near the front door of your house. This makes it easy to pick up your keys when leaving the house, and to get into the habit of putting them back when you return. It can be helpful to make the keys more visible for easier finding, for example with a brightly coloured key ring. Keys themselves can be made of different colours, or have coloured ‘covers’ so particular keys can easily be picked out of a bunch. Have two or three sets of spare keys to leave with family members, friends or a trusted neighbour. You might like to wear a frequently used key on a lanyard around your neck.
Location tracking devices can be stuck to frequently lost objects, enabling them to be found more easily. (See the section ‘Alarms and technical devices’ in Chapter 6 for details of tracking devices.)
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